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The fact that The Cure Parkinson’s Trust was contacted by thousands of people as the news spread about his unexpected death indicated the impact Tom had in life. So many valued his friendship, his support and his guidance

David Sangster

Watch the global Parkinson’s community pay tribute to Tom Isaacs in music video

Global update

Author: Almaz OhenePublished: 22 December 2017

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Earlier this year the Parkinson’s community lost a prominent international campaigner, Tom Isaacs, who lived with Parkinson’s and co-founded The Cure Parkinson’s Trust. Tributes poured in from around the globe, which led UK-based Parkinson’s campaigner David Sangster to produce a special rendition of ‘Perfect Day’ by Lou Reed, featuring more than 60 people with Parkinson’s

When the news spread about the sudden and untimely death of Tom Isaacs, co-founder of The Cure Parkinson’s Trust, campaigner David Sangster was reminded of Tom’s love for music –and decided to put together a video tribute featuring dozens of people with Parkinson’s.

David said: “The song ‘Perfect Day’ has always been a favourite of mine. I was inspired by the original version, in which many popular artists were brought together. This made me think, why couldn’t people with Parkinson’s and the wider Parkinson’s community contribute in this way?”

License to spill

David had met Tom a few times over the course of the last few years and was one of the many people with Parkinson’s in attendance at one of Tom’s last public speaking appearances in April.

“Tom was an inspiration for so many of us living with Parkinson’s. His sense of optimism, his determination, vision and fun were not just attributes one would use to describe Tom, but equally they were tools he would always use to good effect when he spoke publicly, like he did just weeks before his untimely death when I spent some time with him and The Cure Parkinson’s Trust.

“Before he talked about his pursuit for a cure, he would always refer to his ‘license to spill’ as he tried to explain his dyskinesia resulting in what he promised would be a ‘moving’ speech,” David continued.

Tom loved music and would often replace the words from a popular song to fit around Parkinson’s, research and the hope for a cure for the condition.

David said: “The fact that The Cure Parkinson’s Trust was contacted by thousands of people as the news spread about his unexpected death indicated the impact Tom had in life. So many valued his friendship, his support and his guidance.”

David asked Lindsay Isaacs, Tom’s wife, what he would have made of the video. “She said he would have laughed, and really loved it. ‘Perfect Day’ brought together a mixture of people with Parkinson’s, Parkinson’s charities, Parkinson’s researchers and healthcare professionals that encapsulated all he believed in – that it is only through teamwork that we can find a cure.”

In September, The Cure Parkinson’s Trust hosted a celebration of life for Tom, where David screened the video for the first time.

David said: “We have already had around 1,500 views via YouTube, and the feedback has been so warm and positive. I would love to think that it could be screened each time there is another breakthrough that brings us closer to a cure for Parkinson’s, as, after all, that was Tom’s vision.”

Share this story

The fact that The Cure Parkinson’s Trust was contacted by thousands of people as the news spread about his unexpected death indicated the impact Tom had in life. So many valued his friendship, his support and his guidance

David Sangster

Share this story

Comments

http://Parkinsonspeople.org.uk Andy Butler

Thank you Almaz and the gang ! Great Story about David and the World Advocates !

David Sangster

Yes, thanks to the team x

http://www.facebook.com/apdpklis Antonio Carlos Jordao

Amazing|

TheTartanCon

I sit in wonder of Tom and all the heroes that star in it. Thank you Thank you all

IN THE NEWS

A study published in the ‘Journal of Clinical Investigation’ has suggested mechanisms that lead to Parkinson’s in adulthood, may begin much earlier than previously thought. The study, carried out by Northwestern University, Illinois, US, researched movement disorder spinocerebellar ataxia type 1 by genetically engineering a mouse to mirror the human disease. Researchers found that altering circuity in the cerebellum – an area of the brain that controls movements – set the stage for later susceptibility to neurological disease. Professor Puneet Opal, who worked on the study, said: “This is the first discovery of alterations in an adult-onset spinocerebellar disorder that stems from such early developmental processes. “This may well be generalisable to a whole host of other diseases, including Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and amyotrophic lateral sclerosis.”

Global Kinetics receives vital funding

Australian-based health company Global Kinetics has received a $AUS 7.75 million investment from the Australian Federal Government’s Biomedical Translation Fund. The investment will be used to commercialise its Parkinson’s KinetiGraph – a smartwatch-style device that continually tracks the involuntary movements of those living with the condition. In addition to the sum from the Australian government, Global Kinetics also announced they are to receive a grant from The Michael J Fox Foundation, Shake It Up Australia Foundation and Parkinson’s Victoria. Mark Frasier, senior vice president of research programmes at The Michael J Fox Foundation, said: “The experience of Parkinson’s varies day-to-day, hour-to-hour. An objective tool, such as the wearable PKG technology, that passively collects data on the experience of Parkinson’s disease could give patients and their doctors greater insight to calibrate treatment plans and improve outcomes.”

Smartphone app detects severity of Parkinson’s symptoms

A smartphone app– created by researchers from Johns Hopkins University, the University of Rochester Medical Centre and Aston University – can detect the severity of symptoms in people with Parkinson’s, according to a recent study. The study, which appeared in medical journal ‘JAMA’, found that the HopkinsPD app generated severity score levels which strongly correlated with standard movement tests given by physicians. HopkinsPD is expected to help medical professionals analyse Parkinson’s symptoms. Dr Ray Dorsey, neurologist at the University of Rochester, said: “Until these types of studies, we had very limited data on how people function on Saturdays and Sundays because patients don’t come to the clinic. “We also had very limited data about how people with Parkinson’s do at two o’clock in the morning or 11 o’clock at night because, unless they’re hospitalised, they’re generally not being seen in clinics at those times.”